Standing Committee on Health and Ageing 12/10/2012 Dementia: early diagnosis and intervention

BECKWITH, Dr Rodney John, Private capacity

CHAIR: I now call on the representative of the Reliance Medical Practice to give evidence. Although the committee does not require you to speak under oath you should understand that these hearings are formal proceedings of the Commonwealth parliament. Giving false or misleading evidence is a serious matter and may be regarded as a contempt of parliament.

I will ask you to make a brief introductory statement and then we will open up for questions and answers.

Dr Beckwith: My interest in this area of medicine stems from my role as a general practitioner now for some 11 years. I have had a strong interest in aged care in that time, including a lot of aged care residential facilities and home visits to that subject population.

Would you like me to make some comments about the questions?

CHAIR: Yes. Just where you see this area going and what the important issues are; how we can look at early intervention. Then we will just open it up for a discussion—it is very informal.

Dr Beckwith: I think that one of the key points I would initially make is that dementia is not a yes or no diagnosis; it evolves from a process of gradual cognitive impairment to something fairly severe and obvious to everybody. Somewhere along that pathway a diagnosis needs to be established, but some of the submissions that I read on the website, for example, imply that this process could be occurring earlier and earlier. But it is not necessarily something which the intimate relationship which you have with the patient facilitates. I think that some of the patients are naturally fearful of the condition.

I get very healthy people asking me if they have dementia, because of their memory lapses or whatever. But the people who really have dementia are often fearful of the implications of the diagnosis, because such things as their independence for driving and their ability to maintain their independent living at home are threatened by that.

A lot of times patients will be resisting the idea that anything is wrong. There will be a veneer that everything is going well, and a bit of denial, even though it becomes increasingly obvious to everybody around them that that is not quite true. I think we need to take account of that threatening quality in proposing that everybody should have an overt early diagnosis. Of course, there is a lot of benefit in making that diagnosis where it is required. There is an issue about people's independence, and we cannot as general practitioners force people to do anything. There has to be quite a serious state of impairment in order for you to be required to do something. If patients do not want to admit to a problem, then it is pretty much impossible to make them comply with anything.

I have listed about eight management aspects that I think are effective for people with cognitive impairment and I am sure that they would be pretty familiar to yourselves, having looked at the submissions you have already had. There are a couple of specific things that could improve the quality of life of patients. One thing that strikes me as a general practitioner is access to anticholinesterase inhibitors, which are an effective medication for some people—a point that is worth commenting on. Possibly well over 50 per cent of people who are treated with that medication would not show significant benefit. Naturally there is a process to make sure that the right people are getting this treatment. The PBS rules around that at the moment require that for a patient to obtain that that prescription they need to go to a neurologist or a geriatrician and be assessed using—as was the case—the Mini-Mental State Examination and to show improvement with treatment. For the people who it works for it is a really important treatment.

I can think of several people whose lives have been practically brought back to normal; their quality of life, their independence and their ability to stay at home with their partner have dramatically increased. It would be better for that select group if they did not have to have the hurdle of having an appointment with a specialist and facing a bill—or in fact two bills—that they may not be able to afford. I definitely have patients coming to me for whom this medication could be worth considering and who would immediately say, 'Well, I can't afford that.' You cannot even begin to go down that path if they cannot afford it.

CHAIR: Does that happen often?

Dr Beckwith: The cost of consultations is definitely a major factor for my patients.

CHAIR: Do they have another option?

Dr Beckwith: No, not in our area. There may be other options in other areas. Even the price of a PBS script, at $6 or so, may be a significant deterrent for some people. I know that does not sound much, but for the people I am talking about it can be. A single pensioner—a category of person who is pretty much poverty stricken—

CHAIR: Where every single cent is accounted for.

Dr Beckwith: That is right. Easier access to that class of medication would be very helpful and is a strong stimulant to making a diagnosis, because for that person to get the medication you naturally have to make a diagnosis. Then hopefully, of course, you would want to bring other resources to bear.

I think that the current policy of maintaining people in their own homes as long as possible in the general aged care sector is to be strongly endorsed. I feel that with my patients who end up in aged care facilities, either hostels or, as it used to be called, hostel and nursing home—high-care, low-care or whatever you want to use—that is always going to reduce the independence the person has. Immediately, they lose control of any medication that they might have controlled and their mobility—their ability just to come and go—is reduced. So keeping people in that familiar environment makes them feel better, as well, of course, as the stability of being in their own home being important to their cognitive function. It is clear that some people will adapt well to an institutional environment and others will not; we see that pretty quickly in the aged care setting.

I think it would help the independence of our cognitively impaired patients if Webster-paking were a free service; it is a simple thing and it does not even cost much. I actually do not think that everyone should be forced to have a Webster-pak, because that is just taking away something that they want to control. But we know that there are appropriate cases where it should be free, because medication confusion is a major problem if you start to get borderline cognitive impairment.

I have suggested that GPs should, if it were feasible, have a little bit more access to EPC referrals for patients who have this sort of problem. At the moment—

CHAIR: We just need to clarify what EPC is?

Dr Beckwith: Yes, actually coming back on that: at the moment a general practitioner can write a care plan for a patient, and that involves someone who has chronic, complex care needs, which would fit most of the patients we are talking about. Then, if they are eligible for a team care arrangement, which is a slight addition to the basic level of care plan, they are then eligible for five subsidised visits to allied health providers. I think the issues with that are that most of the allied health providers charge more than that subsidy, and so cost for this section of the community is a very big issue—even that $50 subsidy may not be sufficient.

Secondly, the number of those visits is too low and I was merely suggesting that one occupational therapist visit to the home of a cognitively impaired person and one dietician visit would be a pretty good step forward to helping assess the needs of that person.

CHAIR: EPC is an acronym for—

Dr Beckwith: Enhanced primary care referral.

CHAIR: Thanks.

Dr Beckwith: Also, just as a slight elaboration on that theme: it would be good if there were more of those items generally, because the five visits do not go very far.

Extending that concept a bit further: I really think that it would be useful for people with cognitive impairment to have more access to group classes which might have a flavour of physiotherapy or exercise physiology but which could easily also be an extension of the current system of active over 50s exercise classes.

That kind of thing is, I think, likely to be very beneficial to that group of patients, to preserve the social interaction and the physical condition of the person. Whether GPs can be more involved in that, I am not sure.

I would like to make the point—and it is contrary to several of the submissions that I have read—that I think our health system should avoid creating a dependence on scarce resources. This is a bit like what I was saying about that medication: if you only have a handful of specialists whom you can get into in a particular area—and probably it is more of a restriction in rural areas—and you require someone to go to that specialist to get a service, then they are not going to get the service. You have effectively disenfranchised them by saying they need that specialist. So, creating systems that depend on those scarce resources is just taking it away.

CHAIR: In the situation where you do have scarce resources, would you refer them, for example, to the major capital city? Or does that not help either? What do you do?

Dr Beckwith: I believe there should be more ability for the general practitioner to make these decisions. The GP is the most prevalent resource. That is appropriate. And I think those very valuable and effective multidisciplinary teams that can be led by a geriatrician or a neurologist and that are often based in hospitals or in area health services in conjunction with aged care assessment teams, for example, should be reserved for the more difficult situations—for example, where patients may have behavioural problems, which are very challenging for GPs, carers and everyone else to manage. So, you keep that scarce resource for what it can be really powerfully used for.

CHAIR: I have another question. Earlier you spoke about diagnosis, and we heard earlier about timely diagnosis. I know we have been talking about early intervention. I think it is more important that we explore a bit in that area, because what could be considered 'early intervention' and considered good for one particular person may not be for another person. That timely intervention, from what we have heard this morning from others, seems to be a very important point, and I am pleased you mentioned it. Perhaps you could elaborate a bit in that area on the benefits of getting the timing right.

Dr Beckwith: I am mostly affected by the patient's reaction to the problem. If a patient has such significant dementia that discussing it openly in front of them is not going to affect them, then that is obviously something you can just bring up. But when a person is halfway along the path, as it were, you are going to be very sensitive to a threat to their independence. I think a lot of GPs start to do an assessment, and it will depend on the particular circumstances that the individual brings in terms of whatever support appears relevant—medication, social supports and other services at home—and cognisant of the underlying cognitive problem. I have listed eight things that I think are effective management for dementia. Half of them can be done without actually saying the word 'dementia'.

CHAIR: Is that included in the evidence? Perhaps you would like that tabled.

Dr Beckwith: I have not got that in there, but I have copies here.

CHAIR: Then we will table it as evidence. There is another thing I wanted to ask. In some of the evidence we heard earlier today, some doctors stated that they do not feel comfortable making that diagnosis and that therefore they refer the patients on to specialists. Do you agree with that type of procedure? Or would you rather they did make the diagnosis.

Dr Beckwith: I think the discomfort arises from my relationship with the person sitting there. But it does not stop me from thinking about things like point (c) on my fourth page, 'reducing vascular disease risk factors is relevant to managing dementia'. We are going to do that anyway, usually. Encouraging people to remain cognitively active—and there is actually some evidence that it benefits the patient—is something we can encourage anyone to do well before it becomes a sensitive issue for the patient. Protecting the patient's ability to live at home is something where we can act without saying, 'We think it's because you're going to get dementia next year.' On the other hand, instituting anticoagulant inhibitors and/or behavioural treatments is more specific, and it is a bit more challenging to bring that into the patient's life without being clear that this is why we are doing it. A lot of the stuff we can do without being so overt. We can be having a delicate conversation with carers behind the patient's back. This is a bit of an ethically challenging area. One does not want to be giving out information to people that they should not be given, but receiving information is something we can be open to. If family have things to say and concerns to express then we want to be responding to that.

Ms O'NEILL: I think we are in the very difficult discussion about community attitudes, the negative connotations around the terms 'dementia' and 'Alzheimer's' that have the potential to completely shut down conversations and relationships but at the same time the need to have some trigger for support services that would activate appropriate responses such as, 'I have dementia therefore I need free Webster-paks.' There are these critical moments of enabling and disabling people to access to services and who is eligible and who is not eligible. I am mindful of the sensitivities around all of this.

We keep getting really varying information on the capacity and engagement of GPs. We keep getting statements about low levels of diagnosis. But I am hearing from your evidence that it is not necessarily a low level of diagnosis; it may actually just be a registration of the fact that doctors are choosing not to use that term for diagnosis and are in fact doing diagnosis without labelling and starting treatment programs around it sensitive to the particular situation of their personal relationship with that client or that patient. But it does seem to me there is a huge lumpiness about GPS—who is in with looking after aged people, who is not, who is sensitive to it, people to whom it is better off to say, 'Look, they're better off not to know so I just will not do anything.' How many of them are like that? That is how it is characterised, often, for us—that it is the GP who makes an arbitrary decision of: 'They don't need to know. They're an old person. This is just old age. We're not doing anything.' Then there are the sensitivities that you have expressed today and something everywhere in between. That is one of the aspects of the GP stats and the GP as the funnel through which things should go.

At the other end we have specialists saying, 'Don't give GPs this power, because the only time I get to see these people and really get proper plans is when they have to come to me.' So we are getting a rich picture of the complexity of it but no real clarity about the whole profession having a sense of, 'This is where we need to move together.' There seem to be competing stories. Do you have a response to those observations? Is there any guidance you would like to give the committee or are there any observations you would like to make for the committee?

Dr Beckwith: I think it is fair to say, or to try to describe what actually happens and what should happen. To me, if you are a qualified general practitioner then you have an obligation to look at the issues that will potentially help your patient. It is not sufficient for a GP to wash their hands of the situation.

Dr Beckwith: I do not know. I do not think that every time you have a consultation with a person that you necessarily have to be addressing the whole complexity of every issue in their life. If a patient comes in for some ostensible reason it may be an opportunity to work on that task, about the management of their dementia. But a person may confine themselves to the narrow reason why the patient presented. Do you then say they have neglected their job? Not necessarily if, in the long run, you are building up a relationship with a patient and gradually developing knowledge about what the issues really are and getting incidental information from different sources about what the problems might be. Sometimes issues about cognitive impairment are given to us from completely unexpected sources, incidentally. Other times, we only have the immediate reliance on what the person tells us. It is difficult if the patient does not want to admit that there is an issue.

CHAIR: That puts you, as the GP, in a difficult position.

Dr Beckwith: You may only be getting filtered information. It is very hard to draw a conclusion if people are systematically negligent about that topic. I do not really think it is true, from the doctors I know.

Ms O'NEILL: So we need to question some of the reporting figures that may be masking much more complex underlying realities. That is very important to get on the record. The other thing we have had put to us this morning is the possibility of a central agency where home carers, who are going in and seeing things, could actually put in an alert to say, 'Look, I think there might be some dementia going on here' and that would trigger a response in some investigation, where they would see people at risk. They made a contrasting story. If a GP does see a person in this context—and sees that there is food that is out of date in the fridge, for example—and they are trying to negotiate through a health system without having a point in which they can access, it becomes a bit of a problem if the person is left lingering without care. What is your response to a range of other people—the husband, wife, partner, daughter or carer—being set in train for possible investigation of dementia?

Dr Beckwith: That should occur through he GP. I do not know why it would not. I get a lot of information from all of those groups of people and that is a very powerful stimulus to me, to find out about what is going on. I think the general practitioner is the best central point for that process.

Ms O'NEILL: What if people find that they approach their GP and there is a dismissive response? Then what would they do?

Dr Beckwith: They need a different GP, if it is dismissive.

CHAIR: You go for a second opinion.

Dr Beckwith: You just go for a different person altogether, for that patient. It leaves me at a loss if somebody is dismissive, because the relatives' observations—it is a bit like, a completely different situation, where a parent of a young child comes in and says, 'I'm concerned about my child' and you dismiss it. That is really poor management. Parents are very sensitive about what is happening with their children. It is the same as people trying to provide care to somebody with cognitive impairment when something is not the same as usual.

Ms O'NEILL: One of the reasons that has been put forward to us today as to why this might be a difficulty for families on the Central Coast—I am using our site as a mirror, in some ways, of many regional areas—is that the doctor shortage in the area and the way current practices are operating prevent the number of home visits from occurring that really need to happen, and that if doctors were actually able to undertake home visits—and you noted that you do those—that they would be much more able to identify, see and respond to this complex set of behaviours. I am very interested in your thoughts and comments about doctors' home visitation.

Dr Beckwith: I think that the GPs must take responsibility for doing those visits. It is not good enough to me that a person makes some excuse that they cannot do them. I realise that there is a lot of pressure. If you go and do a home visit the patients probably think, 'Oh, the person was only there for 10 minutes and they're out again,' but in fact by the time that you leave the office, go there and come back you might basically be using an hour of your day and you only have, in usual circumstances, eight hours in a day. You probably cannot afford only to see eight patients, for example, just from financial as well as practical reasons.

Dr Beckwith: Yes. However, it is crucial that GPs go and attend the home. It can work both ways: I have patients who I have been worried about, and gone there, and the house is an absolutely pristine, beautiful place, and you think, 'Wow—they're doing fine, and I was suspicious that they weren't'. So it can be revealing in two ways.

CHAIR: I suppose that is only one example, but how do you distinguish from just a messy person? I am messy; I am very messy. If you came to my house you would probably—

Dr Beckwith: Watch out!

CHAIR: How do you distinguish from what is just the person's characteristic and what is a problem? I suppose if we had that answer we would be able to—

Dr Beckwith: There are certain things. If you look at a bunch of medications and you can see chaos, that is a problem. Let us say there is a Webster-pak and half of them are not taken: that is a problem. On the other hand, the reality about Webster-paks is that doctors get the medication list wrong and pharmacists put the wrong tablets in the Webster-pak; all sorts of things happen. Indeed, you often find out that the patient is correct in what they are doing. But, assuming it is a person with dementia who is not taking their medication, you can get the clues from that.

If you can clearly see weight loss, low albumin levels on blood tests and a mess in the kitchen, that is sort of adding up.

CHAIR: It is not one particular thing; it is adding up all the evidence together.

Dr Beckwith: What I recommend in the annual comprehensive medical assessment that is funded for patients over 75 is that we have those as a home visit.

Dr Beckwith: We have a particularly capable nurse doing those, who can identify problems with safety in the house, mobility in the house and medication and food management in the house.

Also, as part of the comprehensive medical assessment, a four-menu mental state examination is performed every year. If that is done as a home visit instead of as an office visit, which are the two options available, I think that you get more information from that.

CHAIR: Thank you very much for the evidence that you have given us today. It is very important to get the perspective from a GP working in a practice, as you have. If there is anything else that we require, we may be in touch, and also vice versa: if there is something that you feel we did not bring up today for whatever reason, feel free to let us know.

The document that you gave us will be tabled as evidence for our inquiry. When we are coming up with our report that will form part of our evidence when we come up with recommendations. On that note, as I said, feel free to contact the committee on anything else that you wish to put forward to us. Thank you very much.